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DiscussionAnyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: Nov 1 2:25pm | Replies (164)Comment receiving replies
Replies to "We each experience ET and HU differently. But we all have one thing in common: When..."
@janemc I had what I think was an extreme autoimmune reaction (joint / tendon pain and stiffness, muscle weakness, including difficulty swallowing and severe swelling with red sores on ankles) after taking HU for 1 month. My hematologist said he didn’t think it was possible that my symptoms were caused by HU, but by another medication. I stopped both for a few weeks, but restarted HU after my platelet count doubled. I then had a similar reaction just a few hours after taking the second daily dose. I saw him a few days ago for a follow up, and he finally said he was going to believe me! So big of him! But at least I don’t have to continue looking a second opinion. Now he is hopefully going to work with my rheumatologist to come up with a treatment plan. They are considering Jakafi, but will probably have to try anagrelide first.
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@janemc Droxia, the brand name drug, is subject to US tariffs. My pharmacy uses generic hydroxyurea, and generics are not subject to tariffs right now. However, the political situation with countries that supply generic prescription meds is fluid. They could be tariffed or the countries that manufacture them could reduce supplies to the US as a retaliatory move. Your pharmacist can give you info about what med supplies look like in your location.